The user’s voice: an instrument for learning about the management of long term conditions Dr. Jane...

The user’s voice: an The user’s voice: an instrument for learning instrument for learning

about the management of about the management of long term conditionslong term conditions

Dr. Jane BridgerDr. Jane BridgerResearch Associate Research Associate

University of the West of University of the West of England, BristolEngland, Bristol

Overview of theOverview of the presentationpresentation

An overview of the studyAn overview of the study Presentation of theory developedPresentation of theory developed Discussion of the core category Discussion of the core category

(enabling life skills) identified(enabling life skills) identified Application of core category (the Application of core category (the

patients voice), with illustrationspatients voice), with illustrations Conclusions Conclusions

Why bother with the users Why bother with the users voice?voice?

CKD does not follow traditional CKD does not follow traditional models of illness cognition;models of illness cognition;

Lay referral, comparison, and Lay referral, comparison, and subsequent affirmation from self subsequent affirmation from self and significant others are key and significant others are key triggers for illness recognitiontriggers for illness recognition;;

There is a paucity of signs & There is a paucity of signs & symptoms;symptoms;

We need to explore users We need to explore users experiences.experiences.

Research QuestionsResearch Questions

What is the illness What is the illness experience of individuals experience of individuals with chronic kidney disease? with chronic kidney disease?

How can the insight gained How can the insight gained inform future interventions inform future interventions for illness and disease risk for illness and disease risk reduction with regards to reduction with regards to chronic kidney disease?chronic kidney disease?

The studyThe study Longitudinal study over one year data Longitudinal study over one year data

collection commenced 11/04, concluded collection commenced 11/04, concluded 03/06; 03/06;

Grounded Theory methodology;Grounded Theory methodology; Exploring the illness experience of adults Exploring the illness experience of adults

with early to moderate chronic kidney with early to moderate chronic kidney disease;disease;

Recruitment from 2 GP practices in south-Recruitment from 2 GP practices in south-west England (total lists approximately west England (total lists approximately 28,000 patients);28,000 patients);

23 participants recruited from a sample of 23 participants recruited from a sample of 119 (Only one with recorded diagnosis of 119 (Only one with recorded diagnosis of CKD) Age range from 35-84 years, all HT, CKD) Age range from 35-84 years, all HT, 48% DM).48% DM).

Data collectionData collection Stage One: Semi-structured interviews Stage One: Semi-structured interviews

using a model of chronic illness using a model of chronic illness perception, 5 stage framework (Horne perception, 5 stage framework (Horne and Weinman, 1994). Journal as aide and Weinman, 1994). Journal as aide memoir (23/23);memoir (23/23);

Stage Two: (@ 6 months) Unstructured Stage Two: (@ 6 months) Unstructured interviews determined by theoretical interviews determined by theoretical sampling with feedback on analysis to sampling with feedback on analysis to date (18/23);date (18/23);

Stage Three: (@ 12 months) Stage Three: (@ 12 months) Unstructured interviews (+/- drawing) Unstructured interviews (+/- drawing) with feedback on analysis and theory with feedback on analysis and theory development to date (19/23).development to date (19/23).

Participants knowledge Participants knowledge of of CKDCKD

23Participants

7 had knowledge of

kidney problem

6 had knowledge of related issuee.g. protein

in urine

10 stated no knowledge of akidney problem

Healthcare centredCollaborative communication

Language of illnessAffirmation

Person centredPersonal health

rolePersonal Coping

styleLanguage of

illnessAffirmation

Social comparison

Collaborative communication

Socially centred

Social comparisonLanguage of

illnessAffirmation

Phase OneOh what kidney

problem?

Phase TwoFinding out about CKD and more…

Phase ThreeLearning

to live with CKD

Categories

Beginning of the kidney problem;

Visibility and recognition

of CKD; Diagnosing

the problem.

Categories

Illness experience of CKD.. or not?;

Feedback about CKD; Managing and monitoring the situation; Relationships

with HCP’s; The care

environment

Categories

Learning to live with CKD;

Gauging change in

status; Individual

illness experience of

CKD

The core category: the enabling<>disabling continuum

The illness experience of CKD

Affirmation

Language of illness

Person Centred

Healthcare CentredSocial

world Centred

Social comparison

Personal health role

Personal coping style

Collaborative communicatio

n

Core Category: Enabling/Disabling

Jane Bridger © 2008

Six health related life skills inter-

relating with the users world

“R no, I don’t think nothing about it, because I have no pains at all, I have nothing that can indicate that at all, that there is something wrong with my kidneys.”

(CM Interview Two)

Application of Core Application of Core Category: Category:

Enabling/DisablingEnabling/Disabling

affirmation; affirmation; personal health personal health

role; social role; social comparison.comparison.

Visibility and recognition of CKD

“It's hereditary, runs in the family, my grandmother had it, my father’s had it, my brother’s got it….” (LF Interview One)

“I think it’s different than being singled out isn’t it, and coming out of the blue. It wasn’t such a surprise for me really, so.” (LF Interview Three)

Application of Application of Core Category: Core Category:

Enabling/DisablinEnabling/Disablingg

affirmation; affirmation; social social

comparison; comparison; personal health personal health role, personal role, personal coping style;coping style;

Visibility and recognition of CKD

““I With respect to the kidneys, what I With respect to the kidneys, what have they said about the kidneys have they said about the kidneys

R Nothing, only this bit here, check R Nothing, only this bit here, check her U&E’s. But I don’t know what her U&E’s. But I don’t know what they stand for… I know they had they stand for… I know they had checked them, and I take four of checked them, and I take four of these Furosemide each day, I don’t these Furosemide each day, I don’t wee if I don’t take them now”.wee if I don’t take them now”. (JJ (JJ Interview One)”.Interview One)”.

““R I don’t think it has ever been R I don’t think it has ever been discussed, oh yes, oh your discussed, oh yes, oh your kidney function is not very kidney function is not very good or whatever.. She has good or whatever.. She has never said we shall have to never said we shall have to keep an eye on this, you’re keep an eye on this, you’re heading….. I don’t know heading….. I don’t know whether they tested it before, whether they tested it before, but that was when they started, but that was when they started, in May 2004.” (JJ Interview Two)in May 2004.” (JJ Interview Two)



affirmation; affirmation; collaborative collaborative

communication; communication; coping style; coping style; language of language of

illness; personal illness; personal health role.health role.

Diagnosing the problem

“The previous consultant realised I had a problem, and started to see me every three months, and each time the problem was there, and then he was the one that referred me.” (FW Interview Two)



affirmation; affirmation; collaborative collaborative



Diagnosing the problem

There was a lack of awareness of There was a lack of awareness of kidney problems amongst kidney problems amongst participants, who also did not participants, who also did not know others with CKD;know others with CKD;Where identified, signs and Where identified, signs and symptoms were commonly not symptoms were commonly not recognised (self, others, HCP), recognised (self, others, HCP), not revealed to the concerned not revealed to the concerned individual (HCP), or not managed individual (HCP), or not managed appropriately;appropriately;Active strategies by HCP to Active strategies by HCP to identify CKD are essential.identify CKD are essential.

FindingsFindings

“R I have been told what has happened I do not really want to know what is wrong with me. They have said if they can hold things in this way, and I have said thank heavens for that. I hope this is going to be all right, give me some tablets, and that’s it. I take the tablets and go back for checkups, and that’s fine.” (JH Interview One)Managing and monitoring the situation



collaborative collaborative communication; communication;

coping style; coping style; personal health personal health

role.role.

“The Professor sent a letter to everybody saying he had got me where he wanted me with regards to my BP.” (FW Interview Two) “I actually believe that physical exercise does help bring the BP under control. I believe it does because I haven’t looked back for some time now.” (FW Interview Three)

Managing and monitoring the situation



Affirmation; Affirmation; collaborative collaborative



“I have to re-affirm that every time I see them, and they say about putting me on tablets. I say look, I don’t like taking tablets because this is how I got in this position in the first place, I wouldn’t be here if it wasn’t for taking tablets that you guys gave me. I just feel that every time I have to say that which is quite sad really.” (RW Interview Three)




communication.communication.

Relationships with healthcare professionals

“R oh yes, he goes through the whole lot, it’s a worthwhile chat, he talks to you about the situation….and you have got trust. You feel he is doing something for you. Well he has, its not you feel it, you know he has.….” (FW Interview Two)

Relationships with healthcare professionals




communication; communication; language of language of


““In fact I didn’t know I had one until In fact I didn’t know I had one until you came (laughs). In fact I said to the you came (laughs). In fact I said to the Doctor about it and he said oh you Doctor about it and he said oh you know when you give them a urine know when you give them a urine sample, there are bits and pieces sample, there are bits and pieces floating about in there, and according floating about in there, and according to the letter, my condition was to the letter, my condition was deteriorating, but nothing much to deteriorating, but nothing much to worry about, it was just deteriorating. worry about, it was just deteriorating. Until that I didn’t know I had a kidney Until that I didn’t know I had a kidney condition (laughs). No I never talk condition (laughs). No I never talk about that, I don’t think about it.” about that, I don’t think about it.”

(DF Interview Three)(DF Interview Three)

“I have a great facility for throwing things to the back of my mind and not thinking about it, and therefore whether that is the right attitude or not I don’t know.” (JH Interview Three)



Coping style;Coping style;personal health personal health

role; role;

Learning to live with CKD

“R: I check my blood, I check my sugarI: That’s rightR: I can know if it’s up or down, but I can’t check if my kidneys are up or down, there is no physical check I can do, it’s only when you take your urine, they tell you whether there is a bit more protein. Actually last time they told me it was actually down, there was an improvement.” (FW Interview Two)




communication; communication; coping stylecoping stylelanguage of language of

illness; personal illness; personal health role; health role;

Gauging change in status

Participants sought means to gauge Participants sought means to gauge status about kidney function and status about kidney function and prognosis;prognosis;

Participants used different coping Participants used different coping strategies to cope with living with CKD, strategies to cope with living with CKD, denial, compromising, grieving, denial, compromising, grieving, maintaining control, and seeking to maintaining control, and seeking to retain a normal life;retain a normal life;

A lack of general awareness of CKD A lack of general awareness of CKD limited support available from external limited support available from external sources which resulted in no formal sources which resulted in no formal psychological support for those with CKD.psychological support for those with CKD.

FindingsFindings

Furosemide 160mg/day

ConclusionsConclusions Chronic Kidney Disease (CKD) (excluding Chronic Kidney Disease (CKD) (excluding

dialysis and transplantation) generally has an dialysis and transplantation) generally has an ‘invisible’ personal, public and professional ‘invisible’ personal, public and professional profile;profile;

The enabling/disabling processes The enabling/disabling processes determinedetermine whether CKD is identified, recognised, and whether CKD is identified, recognised, and

actively managed leading to control and actively managed leading to control and regression of disease regression of disease (FW, HJ, PW),(FW, HJ, PW),

or whether there is continuing or whether there is continuing deterioration deterioration (RW, JH, LF, JJ)(RW, JH, LF, JJ)

and how ‘enabled’ the affected individual is and how ‘enabled’ the affected individual is with regards to learning to live with their with regards to learning to live with their CKD.CKD.

Affirmation

Language of illness

Person Centred

Healthcare CentredSocial

world Centred

Social comparison

Personal health role

Personal coping style

Collaborative communicatio

n

Core Category: Enabling/Disabling

Jane Bridger © 2008

Six health related life skills inter-

relating with the users world

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